I am glad you have an answer.
Alex
I wanted to take a moment to update this post.
The neuro took me seriously and while she didn't think I had MS, she tested for things that she thought were more likely. I had a brain MRI which was normal and a nerve conduction study which was also normal. On my follow up appointment I saw a different neuro because the first one quit. She went over my results and advised me to give up my search since I was doing so well and nothing was showing up in the tests.
I'm feeling pretty good and am left to guess what happened to cause me so much misery for so long. My best guess is that it was my long term thyroid problem. It's being removed next month due to it growing in such a way as to cause me to feel like I'm being strangled. If it was my thyroid causing the problem (thyrotoxic myopathy) then the surgery will correct it.
I'm feeling for all those who have MS and MD and my heart goes out to them. I hope that researchers will find ways to halt or reverse the progression and alleviate symptoms.
Thank you again for taking the time to answer my questions :)
Thank you so much! The info is really helpful. I already started on my timeline. I went decade by decade and was shocked at how many symptoms I wrote down for my 40s (I'm 47).
I sure hope the doc actually looks at my list.
Again, I really appreciate your help.
Cheers
Tiff
Here are our community Health Pages.
http://www.medhelp.org/tags/show/7687/Multiple-Sclerosis?section=health_pages
There is an absolute treasure trove of information there on multiple topics relating to MS and neurology. They used to be a lot easier to find, but that's another story...
I think you may find this one particularly helpful.
http://www.medhelp.org/tags/health_page/7687/Multiple-Sclerosis/The-Importance-of-the-Timeline?hp_id=765
Thank you for your answer. I'm in some type of remission from most of the symptoms that are MS-like so I approached my doctor to find the cause of my neuromuscular problems (which have gotten worse). That's when he suggested MS (so I got confused).
I have no idea what to expect at my nuero appointment. Should I put together a timeline of my symptoms? Should I bring copies of all my recent bloodwork and tests?
Thanks so much for your help!
Tiff
Oh, and are you aware of Auditory Processing Disorder being common in MS? Just curious
What you describe doesn't really sound like MS to me (though others may chime in with more insight). Typically MS begins with a relapsing and remitting course, meaning symptoms ebb and flow over time rather than stick around. This is not to say there aren't exceptions, but the things you mention also don't really sound like the more common MS presentations. More typical are vision problems (optic neuritis, diplopia, nystagmus, internuclear opthalmoplegia, etc), sensory issues (paresthesia, numbness in limbs, typically unilaterally), and fatigue disproportionate to activity levels.
From my brief googling, it appears the testing for LGMD or FSHD would be a lot more straightforward, in terms of ruling in or out. As they are strictly hereditary/genetic, finding certain genetic components via biopsy for example will render a yea or nay. Multiple Sclerosis diagnosis is very often a protracted process as it involves ruling out many mimics, considering the MacDonald criteria, and observation over time if results are ambiguous.